The Genetic Alliance UK submitted a presentation entitled The Wales Webinar on the Consultation on the UK Plan for Rare Diseases. The alliance believes that everyone living with a rare disease should be able to receive high quality services, treatment and support. The aim of their stakeholder engagement project was to encourage those affected by/interested in rare diseases to respond to a government consultation on a rare disease plan. The UK has never had a comprehensive plan a for rare diseases, even though 1 in 17 people will be affected by a rare disease at some point in their life, which amounts to approximately 3.5 million people in the UK. Samantha Reeve, Policy Research Officer for the alliance further discusses their experience with AnyMeeting.
“We held four events, in which participants watched live and put questions to the chair of RDUK, Alastair Kent. More importantly, AnyMeeting’s recording function meant that our members could access the webinars at any time. In total, 408 people watched our recorded meetings for England, Wales, NI, and Scotland. Our members were really grateful that they could watch the slides whilst hearing Alastair explain things, and have the opportunity ask questions at the end.”
“We really enjoyed hosting these webinars, being able to connect with our members who can’t attend events. As a small charity, being able to use a free meeting service was fantastic! The stakeholder engagement event was really successful, and although we are waiting for the rare disease plan to be published, we think that it will reflect the interests and experiences of our members. It will also help patients access services and treatments like other patients, in no small part thanks to anymeeting!”